Saturday, February 12, 2011

Addressing the inaccuracies

I had the misfortune of reading an "education article on juvenile arthritis".  Unfortunately, reading this was akin to how I would imagine reading a JA article in the National Enquirer would be.  The educational content was significantly lacking at best, downright ignorant & hurtful to the cause at worst.  As a parent of a child that has had arthritis for several years now, I have seen, read, and had conversations that absolutely floored me, but this one still has me angry a week later.  The link to this misinforming JA article is here.  If not for copywrite laws I would copy & paste it.  Apparently, the "doctor" that wrote the article writes these and leaves them on his blog.  The majority of his writing is riddled with errors; some advice is dangerous in other articles.

What makes me angry is that this man has no medical training as a pediatric rheumatologist, or in rheumatology at all.  He is writing about the same preconceived notions without doing the research that anyone with an opinion could write, but because he has doctor in his title, people are more likely to believe him.  This can be very detrimental when the subject is something like JA.  We fight so hard to raise awareness, trying to let people know that AutoImmune Arthritis is not because the joints are wearing out from use or old age.  AA is an AutoImmune disease; the body is attacking itself!  No one knows why this happens.

The first (intro) paragraph is innocent enough, though they don't call Juvenile Arthritis "Juvenile Rheumatoid Arthritis" anymore.  Studies show that most children do not have a positive Rheumatoid Factor; children that do generally have other issues, such as Mixed Connective Tissue Disease.  I'll let that slide because some old school docs still refer to it as JRA.  (I prefer Juvenile AutoImmune Arthritis, though that is not what the experts call it.  It's easier to say that and have people actually understand as opposed to making comments based on ignorance because they think they understand.)  Perhaps it's because he doesn't know that the Arthritis Foundation has 100+ different disease that fall under the umbrella of arthritis, including Raynaud's Phenomenon, Mixed Connective Tissue Disease, Lupus, Dermatomyositis, Polymyositis, Behçet’s disease, Lyme's Disease, Tendonitis, Wegener's granulomatosis, Scleroderma, etcetera.  These diseases are all different, yet they are all forms of arthritis.  Yes, children can get them all.

From paragraph number two, the first thing that struck me is that every article in the past that I've read said that most children are generally diagnosed around 18 months because that is when the child is walking, and often seems to be struggling to walk.  Symptoms can appear at any time.  I've never read that boys symptoms show after girls.  That could be correct, but I could neither prove nor disprove that one.   I personally don't believe that is true.
"JRA is usually temporary, and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time."  The first thing that I have to laugh about here is this:  AutoImmune disorders are a result of an over-active immune system.    This would be why these children are put on drugs like Methotrexate, Enbrel, Remicade & Humira, which are all immune suppressors.  Some children are lucky enough to have it "disappear", otherwise known as remission.  They are not "cured".  Many of the children that had JA when I was growing up are the same people that now suffer in silence, told that they can't be sick because we can't see it.  How many people do you know of that had Lupus just go away?

This doctor admits that we don't know what causes JA, but he believes it's due to an energy imbalance caused by the spleen & liver.  Hmmm, some systemic cases may have those organs involved, but most people that I know do not have any organ involvement.  He goes on to say that the weather on the day of conception plays a part, as does the energy of the parents on that day.  So, if you're having a bad day and it's raining out when you're child is conceived you are much more likely to have a child with arthritis?  Somehow, I think not.   He seems to place a lot of blame on the parents.  I can honestly say that I did everything right during my pregnancy with my JA child.  I didn't drink or do drugs (and still don't, thank you!).  I quit smoking, I ate right, got enough sleep, babied myself to a degree, tried to stay away from any stressful situations.  I did everything right.  So, this is my fault?  If any of my children should have gotten JA then, it would have been my oldest.  My doctors advised me to keep smoking since I had a lot of stress, I didn't do any drugs or drink with her either, but I was pretty stupid about nutrition.  I certainly could have done better.  And she's perfect.  Go figure. 

He believes that better nutrition would benefit.  Though that makes a lot of sense, there are no studies that prove that diet has a hand in any of this.  There are specific foods that help reduce inflammation, and others that can cause it (like the nightshade plants- no peppers or potatoes, if I remember correctly).  In the beginning I did a ton of research on this, hoping that I could maybe make it disappear through better diet.  Aside from that info, the best that I could come up with is that many people with AutoImmune Arthritis also have other AI diseases that affect their digestive system.  Many are gluten sensitive and feel much better with a gluten-free diet.  Some can't digest sugars properly either, and they feel better cutting sweets out entirely. 

The last thing that I will pick apart for now is that this man claims that positive thinking "also plays a big role in the speedy outgrowing of JRA".  Ok, I do believe that positive thinking does a LOT of good, but I do not believe that you can cure yourself that way.  I also believe in the power of prayer, but that doesn't mean that Jesus Christ is going to come and cure my child just because I ask Him to.  He has a plan, it is perfect, I have no idea what it entails, & so I will not always get my way.  I realize that Oriental medicine is much different than traditional US medicine.  I know nothing about Oriental medicine partially because I have not trained in it and I do not just decide without fact-finding that something should or should not be true.  However,  I believe that if you're going to write an article on a condition that affects any group in the USA, you should do some research on some material written & proven true in the USA.

On a side note, Emily's new wheelchair came in!  We are very happy about this.  I am thrilled that it came in before a myositis flare left her incapable of walking, for one.  Obviously, we are hoping that will never happen, but since the odds are not in our favor we felt like getting a chair in quickly would be for the best.  Currently her endurance and stamina are not good.  She tries very hard, but if we have a lot of walking to do she simply can't do it.  Walking from the car to her doctor's office at the hospital wears her out.  We use the chair to get the the parking garage on one side to her doctor upstairs and at the opposite end.  If we happen to go to the mall (which is very rare, thankfully) she can't handle that.  Partially it's because her legs can't do it, but also because the steroids have puffed her out so badly that she can't get comfortable.  Of course, she went from 42 lbs to 62 lbs in a month.  I think 30% went to her face, 50% went to her belly, and the rest got spread out.  Her belly went from not having an extra ounce to looking like she was due with twins any day.  That does not make it easy to move.  Her feet are having a rough time adjusting, too.  It's a lot of extra weight added very quickly.  Still, she's very blessed.  Many JM kids are still bedridden for months and months.  She was only mostly down for about 2 months;  at her worst she could still drag herself across the house to the bathroom.  Many kids can't.  I shall leave with a new pic of Em in her chair  :)  We had just gotten her out of her bath;  I hadn't had a chance to comb her hair or anything yet.  We were rushing to get her into bed, but I really wanted to get it set up in case we're in a hurry the next time we need it.  The pictures were an afterthought.


  1. Nice post. I concur with your comments. My husband and I were discussing last night how a lot of kids are bedridden and how glad that we are that our daughter was not. She can't walk without a back brace and a walker, but she is not bedridden.
    I like your new wheelchair. Do you rent or buy that? We have one that is temporary, so we need to come up with another option in the next month or so. Ours is okay...not great.

    Thanks for taking the time to post this. So many people think that when someone has "md" after their name that makes them an automatic expert. Not true!
    Great job pointing out his inefficiencies (to say the least).
    Hugs! Kristine

  2. Wow! Can't believe that this person is a doc...that article was very inaccurate...more like someone's random opinions and thoughts. Anyway, thanks for all you share around your research. Every bit of info sheds some new light. I am glad that Em finally got her chair. Let's hope it collects more dust than use :) I showed Parker and he almost started to cry to see another child in a wheelchair like him. I am sending you love and hope...

  3. Danielle,
    You and Emily have my love and support and respect. You did a fine job addressing the lies. Let's hope you don't have to spend your time doing that so much - you need to spend it with your sweet children!!

  4. Hey Danielle,

    When I first read this Dr.'s article I was as outraged as you were, but I started thinking about my own journey to find an alternative to what we call traditional medicine.

    While this doctor did a horrible job of relaying his message, I know from my own research that Oriental Medicine or Traditional Chinese Medicine, treats the body as a whole. They don't treat the symptoms but instead find the core problem and treat it. Their medicine is not based on just one kind of treatment. They use several treatments that compliment each other, like acupuncture and herbal medicine. I use acupuncture to get rid of my migraines and it works miracles. They believe in mind over matter, that's why he made a reference to positive thinking.

    When I am depressed I have more pain but as soon as I start looking at the things that depressed me in a more positive light, my pain goes away.

    As far as arthritis affecting the organs, yes it can. Especially RA. RA is a systemic disease and can affect the heart, lungs, skin, digestive tract, kidneys, blood, blood vessels, eyes (this is call Sjogren Syndrome and I have it), and last but not least the nervous system.

    Diet really does play a big part in RA and any other arthritis. I wrote an article called "Inflammation: Eating Anti-Inflammatory Foods" When he was talking about good nutrition I believe he was not talking about yours when you were pregnant but the nutrition of the the child. There are certain foods that trigger inflammation, like sugar, white flour, the chemicals in processed foods, genetically modified foods. Now days more people are running around doing errands or taking their children to their extra curricula activities. They just don't have the time to fix a healthy, well balanced meal so they stop at the nearest McDonald's.

    The man said some pretty dumb things that made it quite obvious he doesn't have a clue about JRA. But, speaking from experience, Oriental Medicine does work and it's been around for over 5,000 years with proof that it works not only now but long ago as well. Proof has been found in the ancient burials in China and Europe.

    1. Here it is, several years later and I found myself drawn back to this post. I re-read his article, and it still makes me angry. However, while I didn't quite understand what you were saying back then, I totally get now. I see what Monsanto is trying to do, how many hands he has in his pocket, and how deep those pockets are. I was recently diagnosed with Sjogren's myself, and I realized how sugar affects me, and how processed foods make me feel worse. I understand now. I am going to read your article after I actually get some sleep tonight. Thank you so much for reaching out, even if it took me a few years to really "get it".

      One last thing- my hubby & I are working on stocking up so we can try the Whole 30. We have been playing around with Paleo foods for a while. I just have a few more things to add to our collection and we should be ready! I don't think I can get Emily to eat Paleo with us, but we can at least lead by example. Thank you again! I appreciate it!

  5. Ya know, the funny thing is that I do believe in Oriental medicine, especially if used in conjunction with western medicine. It's just the way that he worded the whole thing. The way that he referred to the spleen and liver being causes but never bothered mentioning the systemic cases... I don't believe that the spleen and liver can cause in all cases, or probably even most. I would imagine that is correct for the systemic cases, though. Those bothered me. It's like he basically stuck to just joints, but there's so much more than joints in arthritis. He seemed to not realize that JRA is not only an outdated term but like saying that 100+ diseases are all one.
    On the diet front, I personally believe that God gave us fruits, veggies, & control over the animals for a reason, and did not give us factories to process wheat for a reason. I definitely believe that there are many out there that are gluten sensitive, or have other issues that simply cannot eat those things. I believe that there are foods that cause inflammation (nightshade plants like peppers for one) and others that help prevent it (like salmon). However, not everyone benefits from a gluten free/ sugar free diet, making me believe that it's not necessarily a cause. I feel that a certain diet definitely makes sense, but when you google it and look under standard medical reference like Mayo Clinic, NIH, AF, eMedicine, or Medicine Net, they say that studies don't show any correlation to diet. I'm going strictly off of research here. Either way, he just totally didn't have a clue about JA. It's one thing to take your ideas and beliefs and apply them to different topics, but when you're a medical doctor and you're applying ideas & beliefs to a topic that you know nothing about... Not such a good idea! That's what made me mad. My hubby tried accupuncture and it worked very well for him! We have looked into alternative medicine, and I agree that it's been around that long for a reason; there has to be something to it. However, I wouldn't undermine the severity of a situation to make my ideas look better, either. If you re-read what I originally posted, I agree with you on many points. It's just frustrating when you're trying to get people to understand that this is a serious disease that affects our children and as well as adults, and along comes this doc with a God complex saying it's no big deal :( Almost 2 weeks & I'm still ticked about it!!!